Hunger

Notes from 2005 PWSAUSA notes from talk by Linda Gourash, "Lack of Satiety: It's not Just About Food."

She proposed a shift in the paradigm from thinking of the kids as always hungry to thinking that they are not sated. She described the study results that showed that when put in front of a buffet when "hungry," they start out eating slowly (more slowly than hungry obese people) but eat for much longer and never really slow down in their eating (as opposed to obese people).

Also, satiety circuits in the human body are much more redundant than hunger circuits suggesting that satiety is more important.

She suggests that an unknown neural defect translates into lack of food satiety and possibly other excessive behaviors.

The OCD like traits may then add to the food problem.

She believes that hunger signals are also blunted because: - infants with PWS are disinterested in food and cry very little - anorexia with excessive weight loss has been observed in PWS patients - persons with PWS may go to bed without eating something for days in association with anger, stubbornness, depression, or psychotic illness - families report success in sustaining patients on controlled 800 calorie diets

She recommends giving the child a lot of food to eat (plated for a meal) but focus on bulk foods and green foods. Supply condiments in packages (like at fast food places) to avoid negotiations

She notes that people with PWS also ingest non-nutritive things in excess: - overuse of non-nutritive beverages (diet sodas) - overuse of tobacco (smokeless and nonsmokeless)

Other excessive noningestive behaviors that are analogous to "lack of satiety" - collecting excessive numbers of ______ (CD's stuffed animals, etc.)

Physical signs of impaired feedback in PWS - altered pain awareness (many examples) - skin picking (lack of response to pain, lack of disgust) - BM smearing/rectal picking (lack of disgust) - incontinence (bedwetting when awake - lack of discomfort/disgust) - diminished sensitivity to increased carbon dioxide and decreased oxygen - diminished shame and modesty

She proposes that they have relative insensitivity to both hunger signals as well as satiety signals.

Thus the drive to eat would not be related to OCD, but rather to limited feedback.

She would like to see a de-emphasis of the hunger paradigm.

She proposes behavior management in the form of continuous external feedback.

And then she stopped.... Just like that!